Sarah Pertz

For more than 25 years, Sarah has been fighting a battle that most of us cannot imagine.

Sarah is bedbound and quadriplegic, suffering from multiple severe medical conditions that cause life-threatening complications and constant, uncontrollable pain. She urgently needs highly specialized medical care, including multiple spinal surgeries, which are not available in California — without significant financial help Sarah will not be able to access the care she needs. 

Sarah’s illness began with undiagnosed Lyme disease as a child. A severe car accident in 2020 caused multiple spinal injuries that were never adequately treated. The conditions she now suffers from cause serious neurological, cardiovascular, and respiratory complications. Sarah’s chronic illness and long-term disability is now an urgent medical crisis. 

Her diagnoses include: 

• Spinal cord damage

• Tethered Spinal Cord Syndrome  (TSCS) 

• Cerebrospinal fluid (CSF) pressure disorder

• Multiple Vehicular Accidents

• Traumatic brain injuries (TBI’s)

• Chronic Lyme disease and co-infections

• Ehlers-Danlos syndrome (EDS)

• Postural Orthostatic Tachycardia Syndrome (POTS)

• Mast Cell Activation Syndrome (MCAS)

Specialized treatment could significantly improve Sarah’s quality of life and prognosis. But the specialists she needs are not available in California, and the cost of reaching them—along with the cost of essential caregiving, medications, medical supplies, transportation, and basic necessities—is far beyond what her family can manage alone.

Sarah’s Daily Reality

Sarah is entirely bedbound and leaves her home only by gurney for essential medical appointments. Her mobility is so limited that she can only lie on one side without experiencing extreme pain. Severe sensitivity to scents, light, and sound forces her to spend much of her time alone in the dark.

Financial hardship has repeatedly forced Sarah to delay medical care, ration or go without medications, stretch food supplies, and spend extended periods without her caregiver. Even meeting her most basic needs has become a constant struggle.

No one should have to go without essential medical care or basic necessities simply because they are disabled.

Because nursing homes and rehabilitation centers cannot safely accommodate her complex medical needs, her medical team has advised that she remain at home. Continuous in-home caregiving is not a luxury for Sarah—it is essential to keeping her safe while she awaits treatment.

The Specialized Care Sarah Needs

In 2023, the generosity of friends, family, and supporters made it possible for Sarah to travel across the country to see highly specialized neurosurgeon Dr. Paolo Bolognese at Mount Sinai South Nassau Hospital in Oceanside, New York. The surgery he performed using specialized technology he developed relieved life-threatening symptoms and gave Sarah renewed hope.

But it was only the first step.

Her doctors have recommended additional specialized evaluations and treatment, including further spinal surgery. While Sarah waits, her condition continues to deteriorate.

Sarah’s condition is extraordinarily complex, and only a small number of specialists have the expertise needed to evaluate and treat her. None are in California.

The cost of accessing this care can be overwhelming:

• Specialized consultations can cost $1,500–$3,000 or more out of pocket.

• A local medical appointment may require specialized ambulance transportation costing approximately $1,000–$2,000.

• Out-of-state travel may require a medical helicopter costing up to $50,000 each way.

• Sarah’s 2023 trip to New York for surgery cost approximately $100,000, leaving Sarah and her family with significant medical debt even with generous donor support.

Sarah is not only fighting her illness—she is fighting to access the care that could help her.

How Your Support Will Help

Donations will help provide:

• Specialized medical and neurosurgical evaluations and treatment

• Medications, including allergen-free compounded prescriptions

• Medical and personal-care supplies

• Weekly in-home nursing for IV support

• Essential caregiving before treatment and during recovery

• Specialized medical equipment, including oxygen therapy

• Specialized medical transportation

• Travel, lodging, and care for out-of-state treatment

• Other critical healthcare expenses not covered by insurance

Give Sarah a Chance at a Better Future

Despite everything she has endured, Sarah remains compassionate, hopeful, and remarkably resilient. Those who know her are continually inspired by her strength, humor, and ability to hold onto faith through unimaginable challenges.

This fundraiser is about more than medical bills. It is about keeping Sarah safe while she pursues treatment—and giving her a chance at a better future after more than two decades of illness and disability.

Every donation brings Sarah one step closer to the specialized care she desperately needs.

If you cannot donate, please consider sharing Sarah’s story. Every share can help connect her with someone who may be able to make a difference.

Thank you for standing with Sarah, giving her hope, and helping her continue the fight for the care—and the future—she deserves.

The Friends of Sarah